When I was a kid, I was not especially athletic. Rather, I was more on the bookish side of things. In fact, I am a bit ashamed of admitting but on more than one occasion, I convinced my mother to obtain a medical note for me so that I would be allowed to not participate in gym class!
But, we can all change! Over the last 9 years, I have worked out pretty steadily with my personal trainer, Renata Joy, twice a week. Then about a year ago I bought a bicycle and began riding it. Shortly after this, a patient of mine mentioned the NYC bike-a-thon which is 40 miles through all 5 boroughs which she had done the year before. And unbelievably, when registration opened, I went ahead and signed up. As I was training, it came to me that since I was already doing this, why not try to raise funds through it for Epilepsy Free, the not-for-profit that offers summer camp and educational scholarships to persons with epilepsy and psychogenic seizures (PNES or NEAD)? And then a second patient had an excellent idea: put the fundraiser up on Gofundme.com so we could start to spread the word through social media. Thanks to a huge community effort, the page began to be shared all over Facebook, Twitter, etc.
What happened then was pretty awesome: donations began to come in little by little and by the night before the ride, we had raised a whopping $3050 between the on-line website and through checks that were mailed in.
Just a few weeks before the ride, the medical director of the Northeast Regional Epilepsy Group, Dr. Marcelo Lancman, announced that NEREG would match the funds raised by May 1. That put us at an impressive $6100 raised by May 2!
On May 1, I rode through New York City. Knowing that an entire community had made donations to this ride helped push me along (it was cold and raining-sometimes almost a downpour)! 32,000 people had registered so the start of the tour was slow going but then bicycles started to spread out and the ride really took off. Imagine what a surreal experience to ride down the FDR with no cars and crossing bridges with absolutely no cars!
The Epilepsy Free (EF) not-for-profit organization grants summer camp and continuing education and college to children and adults living with epilepsy and other seizure disorders including psychogenic non-epileptic seizures (PNES). It is the only not-for-profit I know of that specifically grants scholarships to those diagnosed with PNES (or NEAD) and it also grants scholarships across all 50 states (there is no residence restriction like many local foundations have). If you can help support EF, please go to this page: http://www.epilepsyfree.com/give-back/donation/
By the way, there is a slightly shorter bike ride (30 miles) coming up in September, 2016 in New Jersey. Can I interest anyone to ride with me for EF?

2 Responses to “A Bike-a-thon to raise funds for Epilepsy Free which grants scholarships to persons with epilepsy and psychogenic non-epileptic seizures (PNES or NEAD)”

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Psychological non epileptic seizures (also known as PNES) are behavioral events that look a lot like epileptic seizures (ES), but are in fact produced by emotional stress rather than electrical disruptions in the brain.